From the UK, expecting results soon

Didiabolical
Didiabolical Member Posts: 18

Good Morning everybody. I hope you don't mind me being on this site as I'm from the UK but I can't seem to find anything similar here. I've been helped a lot by the various posts you guys have put up here. It's great to find people who have been through similar situations as me and come out the other side.

I finished my treatment in August after having chemo and radiotherapy. I'm 51 and have a husband and two children (not really children anymore, 20 and 16 years old) so was devastated to be told that my treatment was more likely to be palliative rather than curative. Anyway, I'm going for scans on the 20th and 21st January to see whether a) the treatment worked and got rid of my cancer, b) whether the cancer is still there but localised or c) whether it's still there and has spread. I get the results of these scans on 4th February. Everyday is a day closer to getting those results and I am dreading it.

At the moment, I am relatively symptom free apart from an aching back and less fexibility that prior to treatment so my fear is that the results show that the cancer is still there and/or has spread. Because I don't have symptoms, I think if I'm told it's still there/spread and that i need to undergo further treatment, my inclination will be to say no, i'd rather carry on as I am than have the horrible side effects associated with chemo or to have to be operated on and be left with a colostomy bag. I know this may sound foolhardy and possibly quite selfish, but I'd rather my family remember me as me rather than someone suffering from treatment side effects.

Has anyone else been in this situation? I'm not sure I want to prolong my life at any cost. I'd rather stay feeling normal for as long as possible and live a normal life for a shorter time than to have a longer life but be feeling horrible...

     

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Comments

  • Adam26
    Adam26 Member Posts: 125
    Hey,
    I'm from the U.K

    Hey,

    I'm from the U.K too!

    I'm sorry to hear about the prognosis they gave you, although from reading this site I've seen people who have survived stage 4 anal cancer and are leading normal lives again.

    My mum is recovering from chemo/radiotherapy and she also has stiffness, so I imagine that's a completely normal side-affect you are experiencing.

    As for the potential of a colostomy bag, there are people on this forum who have them and would no doubt encourage you to go through the process that results in you having one too, if that's what it takes for you to get better. 

    Don't lose hope, this cancer is very sensitive to the treatment they give you.

    Best wishes,

    Adam

  • mp327
    mp327 Member Posts: 4,440 Member
    Didiabolical

    I'm glad you have found this site and that it's made you feel less alone in this fight.  I'm very sorry to hear that your doctors have given you a poor prognosis, but I hope that your upcoming scans will show that your cancer is gone and prove your doctors wrong. 

    As for your thoughts about having to undergo surgery and have a colostomy, I can understand how you feel.  I've run that scenario over and over in my head many times and I must be honest, it scares the hell out of me and I'm not sure I could do it.  That said, I know many people, including some on this site, who live with ostomies and do just fine, once they go through a period of adjustment.  I pray that I'll never be faced with making that decision, but of course, cancer has a mind of its own and none of us knows when our situation might change. 

    I wish you all the very best and hope that your scans will show a good response to your treatment.  Please come here any time prior to your scans to vent or express your feelings.  This is a great group of people and we are very supportive of each other.  We will be here for you!  Take care.

    Martha

  • pializ
    pializ Member Posts: 508 Member
    mp327 said:

    Didiabolical

    I'm glad you have found this site and that it's made you feel less alone in this fight.  I'm very sorry to hear that your doctors have given you a poor prognosis, but I hope that your upcoming scans will show that your cancer is gone and prove your doctors wrong. 

    As for your thoughts about having to undergo surgery and have a colostomy, I can understand how you feel.  I've run that scenario over and over in my head many times and I must be honest, it scares the hell out of me and I'm not sure I could do it.  That said, I know many people, including some on this site, who live with ostomies and do just fine, once they go through a period of adjustment.  I pray that I'll never be faced with making that decision, but of course, cancer has a mind of its own and none of us knows when our situation might change. 

    I wish you all the very best and hope that your scans will show a good response to your treatment.  Please come here any time prior to your scans to vent or express your feelings.  This is a great group of people and we are very supportive of each other.  We will be here for you!  Take care.

    Martha

    another one from UK

    Hi there,

    I am sorry that you too had to find this site, but as you have found already, there is a fantastic support base. I am also on the Macmillan site (uk) which also has an anal cancer group. 

    There is a lady on this site who was stage 4 when diagnosed & she continues to do well some years after treatment.  I don't know what stage you were at when diagnosed, but hope that gives you some hope.

    As for waiting for scan results & appointments, it is an anxious time as I think we would all agree. So much depends on them. 

    As far as a colostomy, I know of a few people on both sites who have needed one either at commencement of treatment, or subsequently. A scarey prospect, but doable. I know I am speaking without qualification, but from what I see, people adjust & find a way of accomodating their sidekick. 

    I will be thinking of you & hoping for the best outcome

    Liz

  • eihtak
    eihtak Member Posts: 1,473 Member
    Didiabolical....

    Hi, I am almost 4yrs post treatment for Stage 3b anal cancer, I will be scanned next week as well as part of my follow-up. So far I have been NED (no evidence of disease) regarding anal cancer and for now have no reason to believe this scan will be different, though admit to that lingering worry I try to usually dismiss.  (I was diagnosed with breast cancer about 3 years ago but it was not directly related to the anal cancer.)

    Remember that this cancer is considered highly treatable and if necessary further options such as an ostomy bag may not be as bad as you imagine.  If someone had told me that years ago, I would not have had the ability to comprehend life with such.  At the onset of my treatment I received a colostomy that was only meant to be temporary and reversable 6 months after treatment.  Unfortunately the radiation damage has made it a permanent part of my life.  It is situations such as these that I wish we could meet in person as I can not put into words the ease at which I manage this issue.  While, as mentioned the initial adjustment period was rough, once finding the right products and knowing the reaction of certain foods on digestion (just like everyone else without a bag) having an ostomy presents little limitations on a full and active lifestyle. I think the image of someone walking around with a "bag of poo" attached to them all day is what most people think about.  Depending on what and when I eat, my bag requires emptying a couple times a day and is otherwise empty. It lays flat and un-noticeable at most times. Things like swimming, sex, and physical activities are all still doable.  While I understand not everyone is the same, and some do have unique complications, with trial and error there is a solution for most problems.

    That being said, I will pray this is not a challenge you need to face and that your scan results are something to celebrate.  I will have you in my thoughts and prayers as we wait together for results.

    katheryn

    ps. Regarding general aches, stiffness and flexability I think these are common during recovery for most of us. Radiation involves so much more than the site of the tumor and continues to destroy tissue for weeks following treatment. After a few months I enrolled in a very light yoga class and have since increased the intensity of the stretches and poses and I found it helped tremendously.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Life.

    I'm sorry to meet you under these circumstances and feel badly for what you've been through and may possibly face in the future.

    I was diagnosed with stage III-a or III-b, cancer and received the mitocycin, 5-FU, radiation treatment. I finished on July 9th. I had a backache for months afterwards, as well as lower abdominal pain and anal pain. MD said it was due to radiation injuring the connective tissue around my colon making it inflexible. I had a course of physical therapy designed specifically for cancer patients - it helped me regain strength, stamina, and control pain. I had my first 3 month follow-up in October. There was no evidence of [cancer] disease (NED), though I have inflammation, parakeratosis, and dysplasia of my anal canal. However, we all worry about cancer being missed on the scans or about the disease's recurrence. That is normal and extremely human.

    I cannot speak from the experience of having an ostomy myself, only as a former RN who has had patients with various types. One was a 17 year old girl who had such severe abdominal pain that she was brought to the emergency department of a small rural hospital. While she was worked up for a tubal pregnancy, her neglected and inflammed appendix quietly burst. She was transferred to us as her abdominal cavity was severely damaged which lead to her colostomy. She did very well and kept up an accepting attitude.

    If it comes to that for you, an ostomy nurse will help you chose supplies that work for you because there are many options. Once under good control, you may NOT have to wear a bag all the time. A support group, either face-to-face or online, can offer more tips on adjustment. Ostomy surgery is not anyone's goal, but if that is what's in your stars, as posters say above, it will just become your new normal.

    We all have curiosity and want to see what will happen next in life, sports, news, arts, science, whatever - don't give up your passport to life due to a relatively minor thing like an ostomy. Your family will be grateful to you for chosing life and staying with them.

  • Didiabolical
    Didiabolical Member Posts: 18
    Thank you for your support

    Thanks everyone for your really useful words of support and encouragement - it really helps to hear other's stories and find that people do survive this disease. I am stage 3a i think (T3N1?) but my oncologist gave only a 20% chance that my treatment would work. I'm not sure why this percentage is so low as, having researched the internet thoroughly, I cannot find any similar statistics. I intend to ask him when I see him on the 4th.

    Having said that I was symptom free last time I posted, I had really bad diarrhoea last night and this morning - literally running out of me (too much info?). I'm hoping it's a tummy bug rather than anything more sinister....

    anyway, once again, thanks for taking the time to reply and I'll keep you updated with my scan results

     

    Di

  • judyv3
    judyv3 Member Posts: 143 Member

    Thank you for your support

    Thanks everyone for your really useful words of support and encouragement - it really helps to hear other's stories and find that people do survive this disease. I am stage 3a i think (T3N1?) but my oncologist gave only a 20% chance that my treatment would work. I'm not sure why this percentage is so low as, having researched the internet thoroughly, I cannot find any similar statistics. I intend to ask him when I see him on the 4th.

    Having said that I was symptom free last time I posted, I had really bad diarrhoea last night and this morning - literally running out of me (too much info?). I'm hoping it's a tummy bug rather than anything more sinister....

    anyway, once again, thanks for taking the time to reply and I'll keep you updated with my scan results

     

    Di

    Kindred spirits

    Having been through the treatment and being told that it didn't work must be devastating, and I cannot imagine.  I sincerely hope that you get more encouraging news soon.  

    Also, I sit here with my computer in the bathroom, as I spend so much time in here - it helps to have a distraction.  I was rudely awakened by a "hurry" call to the bathroom (didn't quite make it) at 4:30 a.m.  I have had this happen a couple of times before.  I am just about exactly one year post treatment.  I have more difficulty with diarhhea now than 6 months ago.  I know certain things set me off, but sometimes it just seems to happen for no apparent reason.  My point of all this TMI is I would not suspect anything more sinister.  It's likely just side effects from this treatment.

    I'll be thinking of you and praying for you as you navigate through your options.

    Best to you,

    Judy

  • mp327
    mp327 Member Posts: 4,440 Member
    judyv3 said:

    Kindred spirits

    Having been through the treatment and being told that it didn't work must be devastating, and I cannot imagine.  I sincerely hope that you get more encouraging news soon.  

    Also, I sit here with my computer in the bathroom, as I spend so much time in here - it helps to have a distraction.  I was rudely awakened by a "hurry" call to the bathroom (didn't quite make it) at 4:30 a.m.  I have had this happen a couple of times before.  I am just about exactly one year post treatment.  I have more difficulty with diarhhea now than 6 months ago.  I know certain things set me off, but sometimes it just seems to happen for no apparent reason.  My point of all this TMI is I would not suspect anything more sinister.  It's likely just side effects from this treatment.

    I'll be thinking of you and praying for you as you navigate through your options.

    Best to you,

    Judy

    Radiation Proctitis

    This is a condition that many of us suffer from post-treatment.  Check out this information: 

    http://en.wikipedia.org/wiki/Radiation_proctitis  

    You'll see that there are actually two different types.  One occurs shortly after treatment ends and the other type can come on years after treatment.  Unfortunately, I have experienced both.

  • Didiabolical
    Didiabolical Member Posts: 18
    judyv3 said:

    Kindred spirits

    Having been through the treatment and being told that it didn't work must be devastating, and I cannot imagine.  I sincerely hope that you get more encouraging news soon.  

    Also, I sit here with my computer in the bathroom, as I spend so much time in here - it helps to have a distraction.  I was rudely awakened by a "hurry" call to the bathroom (didn't quite make it) at 4:30 a.m.  I have had this happen a couple of times before.  I am just about exactly one year post treatment.  I have more difficulty with diarhhea now than 6 months ago.  I know certain things set me off, but sometimes it just seems to happen for no apparent reason.  My point of all this TMI is I would not suspect anything more sinister.  It's likely just side effects from this treatment.

    I'll be thinking of you and praying for you as you navigate through your options.

    Best to you,

    Judy

    Thanks Judy, I found your

    Thanks Judy, I found your comments very reassuring. That's the trouble with cancer isn't it, you tend to think every little symptom is a sign of it coming back!

    Di 

  • Didiabolical
    Didiabolical Member Posts: 18
    mp327 said:

    Radiation Proctitis

    This is a condition that many of us suffer from post-treatment.  Check out this information: 

    http://en.wikipedia.org/wiki/Radiation_proctitis  

    You'll see that there are actually two different types.  One occurs shortly after treatment ends and the other type can come on years after treatment.  Unfortunately, I have experienced both.

    Thanks mp327 for the useful

    Thanks mp327 for the useful link. Looking at it it seems likely that this is what i've got so, thanks for the reassurance,

    Di 

  • hogchick
    hogchick Member Posts: 42
    Welcome UK

    I just found this site too and I think it will be helpful. I am 59 and went through chemo and radiation only to find it metastizied to my liver and lungs and have doubled in size and number. I was so sick with the first chemo, I weighed 106, and was in the hospital a couple times because I was dehydrated and white cell count was next to nill. The only option I have is a horrible chemo treatment that will not heal me and I will be sick for 4 months only to maybe get a year or two.  I have decided to let nature take its course and have been given 6-7 months and honey, I'm going to squeeze every bit of life out of every day.  I don't want my gradkids to remember me bald and 80 pds. I want to still "slay" as my granddaughter says, all of the other grandmas.  She said that meant I didn't look like and grandma. I hope you get better. Thoughts and prayers for my UK friend,.

  • nicotianna
    nicotianna Member Posts: 209
    hogchick said:

    Welcome UK

    I just found this site too and I think it will be helpful. I am 59 and went through chemo and radiation only to find it metastizied to my liver and lungs and have doubled in size and number. I was so sick with the first chemo, I weighed 106, and was in the hospital a couple times because I was dehydrated and white cell count was next to nill. The only option I have is a horrible chemo treatment that will not heal me and I will be sick for 4 months only to maybe get a year or two.  I have decided to let nature take its course and have been given 6-7 months and honey, I'm going to squeeze every bit of life out of every day.  I don't want my gradkids to remember me bald and 80 pds. I want to still "slay" as my granddaughter says, all of the other grandmas.  She said that meant I didn't look like and grandma. I hope you get better. Thoughts and prayers for my UK friend,.

    hogchick

    Hi - I am saddened to learn of your bad response to the treatment.  Thank you for sharing.  I think others are reluctant to share their misfortunes.  Luckily, I had a good local response but had mets to my lungs.  The thoracic surgeon took out a nodule & about 15 nodes (2+ were +) in Aug.  A new node has appeared but the docs do not know what it is.  I share your thoughts & hope the rest of your journey is as pleasant as is possible!

    Nic

  • mp327
    mp327 Member Posts: 4,440 Member
    hogchick said:

    Welcome UK

    I just found this site too and I think it will be helpful. I am 59 and went through chemo and radiation only to find it metastizied to my liver and lungs and have doubled in size and number. I was so sick with the first chemo, I weighed 106, and was in the hospital a couple times because I was dehydrated and white cell count was next to nill. The only option I have is a horrible chemo treatment that will not heal me and I will be sick for 4 months only to maybe get a year or two.  I have decided to let nature take its course and have been given 6-7 months and honey, I'm going to squeeze every bit of life out of every day.  I don't want my gradkids to remember me bald and 80 pds. I want to still "slay" as my granddaughter says, all of the other grandmas.  She said that meant I didn't look like and grandma. I hope you get better. Thoughts and prayers for my UK friend,.

    hogchick

    I'm very sorry to hear that your treatment was not successful.  I think all of us have thought about the "what ifs," including what we would do if the initial treatment did not work.  I, like you, would most likely decide to just go out with a bang, not a wimper caused by treatment that would only prolong the inevitable.  Still, I am very sad that you must face this.  Your grandchildren obviously think you are pretty awesome and so do I.  I send you my thoughts and prayers.

  • Adam26
    Adam26 Member Posts: 125
    Hey, hope you don't mime me

    Hey, hope you don't mime me asking, but I am confused. Some people have said they are sorry to hear your treatment didn't work, but it says in your post that you receive the results on Feb 4th, have I missed something here? There are lots of people who have survived stage 3a so I don't see why you can't either.

    All the best To you and your family.

  • Adam26
    Adam26 Member Posts: 125
    Hey, I hope you don't mind me
    Hey, I hope you don't mind me asking, but it's late as I write this and am wondering if I've missed something: Some people have said they are sorry to hear your treatment didn't work, but it says in your original post that you receive your results on Feb 4th?

    There are lots of people who have survived stage 3a anal cancer and there's a big difference between waiting for your results and being told the treatment hasn't worked!
  • Adam26
    Adam26 Member Posts: 125
    Adam26 said:

    Hey, I hope you don't mind me
    Hey, I hope you don't mind me asking, but it's late as I write this and am wondering if I've missed something: Some people have said they are sorry to hear your treatment didn't work, but it says in your original post that you receive your results on Feb 4th?

    There are lots of people who have survived stage 3a anal cancer and there's a big difference between waiting for your results and being told the treatment hasn't worked!

    As proof of how late it is, I

    As proof of how late it is, I have just managed to write you two messages! Think I'll have a re-read of this thread in the morning..........

    Anyway, best wishes to you and I hope you get some good news in February.

  • Didiabolical
    Didiabolical Member Posts: 18
    Adam26 said:

    As proof of how late it is, I

    As proof of how late it is, I have just managed to write you two messages! Think I'll have a re-read of this thread in the morning..........

    Anyway, best wishes to you and I hope you get some good news in February.

    mix up?

    Hi Adam,

    It wasn't me who said my treatment hadn't worked but a new contributor - I'm  still waiting for my results - thanks for your concenrn 

     

  • Didiabolical
    Didiabolical Member Posts: 18
    hogchick said:

    Welcome UK

    I just found this site too and I think it will be helpful. I am 59 and went through chemo and radiation only to find it metastizied to my liver and lungs and have doubled in size and number. I was so sick with the first chemo, I weighed 106, and was in the hospital a couple times because I was dehydrated and white cell count was next to nill. The only option I have is a horrible chemo treatment that will not heal me and I will be sick for 4 months only to maybe get a year or two.  I have decided to let nature take its course and have been given 6-7 months and honey, I'm going to squeeze every bit of life out of every day.  I don't want my gradkids to remember me bald and 80 pds. I want to still "slay" as my granddaughter says, all of the other grandmas.  She said that meant I didn't look like and grandma. I hope you get better. Thoughts and prayers for my UK friend,.

    Totally Agree!

    Hi Hogchick,

    I can completely empathise with your feelings - I think I will be the same if they tell me in February that things have got worse with my cancer. I'd rather stay feeling pretty healthy as I am now than have to feel sick and exhausted due to the chemo and whatever other treatment they suggest. As you say, we have to live every day like it's our last and be thankful we are lucky enough to have people in our lives who really love us and that will be our lasting legacy!

     Can I just ask, how did your family react to your decision not to go ahead with any more treatment?

  • Adam26
    Adam26 Member Posts: 125
    Well that's already a lot

    Well that's already a lot more positive.

    If you read through the pages you'll see plenty of people have had stage 3a anal cancer and survived.

     

  • hogchick
    hogchick Member Posts: 42

    Totally Agree!

    Hi Hogchick,

    I can completely empathise with your feelings - I think I will be the same if they tell me in February that things have got worse with my cancer. I'd rather stay feeling pretty healthy as I am now than have to feel sick and exhausted due to the chemo and whatever other treatment they suggest. As you say, we have to live every day like it's our last and be thankful we are lucky enough to have people in our lives who really love us and that will be our lasting legacy!

     Can I just ask, how did your family react to your decision not to go ahead with any more treatment?

    I was suprised that they all were thinking the same thing. We lost a sister and father to cancer so they didn't want me to go through what I went through with the initial treatment. So they support my decision. My granddaughter is Dorothy in the Wizard of Oz at her highschool at the end of February and another will graduate in June and I so want to make both. They told me not to worry about them, just do what I wanted to do.